Going to have to drop a new search engine in my laptop as I just about wore
my old one out last night <g>.  Anyway, I found a study done by the
Wisconsin Council on Develeopmental Disabilities that demonstrates exactly
the kind of stuff we want to link to.  I am going to try to contact the two
gentleman below to see if we can get trascripts of the conference where this
study was presented.  Here is part of the text from the review of this
conference:

"Conference speakers included Dr. Kevin Murphy, a physician from Duluth who
treats adults with CP; Catherine Frank, a professor of Physical Therapy at
UW-LaCrosse; and Maureen Arcand, the coordinator of the WCDD's Aging and CP
Informational Project.

Of great interest to participants were Dr. Murphy's and Prof. Frank's
comments about the amount of energy people with CP expend. They stated that
people with CP use 100 percent of their available energy just on the tasks
of daily living, while most people use 60 to 80 of their energy for the same
tasks. New research shows that people with CP never build up an energy
reserve. Those attending the conference welcomed this explanation. They
noted that as they have gotten older and continued to walk, they get more
and more fatigued. It provoked thoughts of wheelchair use as a means of
conserving energy."

Or, consider this study, done at the University of Virginia:

http://www.viconstandard.org/archives/1997no2/gaitstudies/gaitstudiesarticle
.htm

I can personally atest to the findings re: gait change.

Wow!  Armed with hard data like this, there's no telling what impact we can
have!  Ken Barber's plight comes to mind for me.  If Ken can take enough
evidence like this study to his doctors and employer, how much weightier
would his arguement be for disability?

I think the research is starting to get done.  The big job will be to get
all these disparate bits of data and compile them into an information
source-point.  Doggone-it!  I'm psyched!

-Kyle


-----Original Message-----
From: Salkin Kathleen [mailto:[log in to unmask]]
Sent: Tuesday, July 02, 2002 5:50 AM
To: [log in to unmask]
Subject: Re: A New Era


Well yes, of course.  The damage to the brain itself is static, no question
about it.  Just as damage to the brain from polio is static. However
Post-Polio Syndrome is a widely-recognised medical phenomenon.  Now it's our
turn to make the medical community sit up and take notice that CP affects
our bodies throughout our lives, not just during childhood.  They can't
assume that just because we walked after therapy they'll never hear from us
again.  Medicine isn't infallible.  Doctors may think they're gods but
they're really humans and can make mistakes. but unfortunately, it can be
very difficult to change the status quo.

Kat

----- Original Message -----
From: "SteveWalline" <[log in to unmask]>
Newsgroups: bit.listserv.c-palsy
To: <[log in to unmask]>
Sent: Monday, July 01, 2002 11:03 AM
Subject: A New Era


As medical science advances the "above 60" CP population will expand as the
baby
boomers continue their march thru the decades.I was told it's not the
condition itself
that worsens,but the changes such condition requires of our various body
parts.Semantics
maybe, but if one is to believe that the initial brain damage itself does
not broaden,then
that's most likely what the docs mean.